Saturday, July 28, 2007

Well, Michaela has been on the Diazepam (Valium) for a little over a week now.

Things are going......ok. Just OK. I'm pretty sure she's still sleeping instead of seizing through the night. I haven't heard a seizure yet. So that's good. But she's developed a pretty hyper alter ego during the day. More hyper than we've seen her in a long time. I'm sure it has to do with all the sleep she's getting now, but it's seriously getting on my nerves. I mean, I'm not too much of an "in your face" type of gal, and that's ALL she does all day.

She lays on me. She hugs me upteen million times. She waves her hands millimeters from my face. ALL. DAY. LONG.

I feel furthest from "Mom of the Year" at times like this. I get so aggravated with her. Like I must have a short fuse or something--which I don't THINK I do. But she can't help herself. She just does what her short-circuited brain tells her to do. On the other hand, I can't help myself either. These behaviors are irritating. I can't help but be put out by it. Yet, I don't like that the majority of our day together, I'm telling her to "stop", or "go somewhere and play", or "not on my lap Michaela!" It's like we can't get along or something. And I'm left to feel like I'm hurting her feelings. That her Mom doesn't want her around.

***

After a full day of Crazy Girl and Stressed Mom, I was ready for her to go to bed. My ears couldn't take anymore, and my heart was just....sad. I told Chris that I was at my limit, and could he please take care of the rest of her nighttime ritual? I just needed some breathing room.

So he put her to bed. And like most every night Chris does it, she called for me to come say goodnight to her. I was more than happy to oblige, seeing as how it would mean I was "done" for the day, and I could retire to my bed with a good book.

"Goodnight Sweetheart."

"To be with me?"

"No, Honey. Mama's going to bed now. I'll see you in the morning."

"To BE with me.......please."

The last thing I wanted to do was stay with her. After the day we had. I just needed to go to bed. I was so worn out.

"To be with me Mama......"

Sigh. I just couldn't bear the thought of denying her this one small kindness. After the day we had. So I crawled into the bottom bunk with her and laid beside her.

"To be with me?"

"Yes, Sweetheart. Mama's here. Go to sleep now."

And like my Mother would've, I gently rubbed her back and listened to her deep breathing as she settled in. Surprisingly, it was calming for me too. I thought about when she was small, when it was just her and I, and how she had made me a mother. I wondered about her future. About whether or not I would pray for another day like today-----to hear that fake giggle one more time.

Saturday, July 21, 2007

And I was wrong on my previous post. I told you that she was going on "Ativan," but it's Diazepam (or Valium, as it's commonly called) instead. Same stuff in a lot of ways. For our purposes, only difference is the name.

On Thursday, we got to Children's at about 4. By 6 or so, she was hooked up to the vEEG (video electroencephalogram: electrical study of the brain with a video camera to record seizures). They also put a Hep-lock in her hand. That way, if the Valium started to give her trouble, they could give her the antidote quickly. On top of that, she was hooked up to a Pulse-Ox to monitor her heart rate and oxygen saturation levels. This was all standard procedure and mainly for precautionary reasons. The vEEG was basically because she hadn't had one in about 2 years. Since she was going to be there overnight, and most of her seizure activity occurs at night, Chief and I both felt it was a good opportunity to get an update in the brain department.

She got the Valium at about 9 pm.

And would you believe it? That whole night she hardly did anything. Oh, she'd snore a little. She even moved around a little. But other than that, she really just slept. That's very unusual.

Most nights I can hear her seizing. She'll have maybe 3 big ones even before I go to bed. Then I'll wake up in the middle of the night and hear a couple more. And those are just the ones I hear. Nevermind the ones I sleep through.

That night in the hospital, I thought I heard one or two in the early morning. The EEG computer has a little button you can press to make a notation on the study if you see a seizure. That way, the reader can easily find the hot spots over the course of 12 hours of video and brainwave feedback. I pressed it twice. I didn't see her having a seizure, but I thought I heard that all-too-familiar disjointed breathing pattern that happens during one.

At around 8:15 the next morning, Chief came in to look over the recording. After standing there for awhile, watching the recording whiz by and looking for the tell-tale scribble on the screen, he quietly announced that he wasn't seeing anything. I told him about the two markers I left with the button. He looked for a seizure at the same time of the marker.

Nothing.

Not one seizure the whole night.

***

We'll continue to give her the Valium every night for a month. Any longer than that, and her brain will get used to it. If that happens, then the drug will be useless. And like I said in my last post, this whole therapy is in order to give her brain a boost. A much needed break from constant seizure activity. And the thought is, that that rest will have a lasting effect on her seizure control. Even if it's just a few good months, it should improve her quality of life, so it's a welcome respite.

And in my mind, any day without a seizure is a good thing. We'll take all we can get.

Wednesday, July 11, 2007

-I finally FINALLY got the cabinet doors up in my kitchen. FINALLY. It looks so much cleaner now. Just makes us want to tackle other projects!

Before

After

-Michaela is still asking to go to the potty. It doesn't happen every day, but every so often, she'll say something like, "We have to go." Which, translated, means, "I have to go...to the bathroom." It took me a while to figure it out. I'd just keep answering her, "No, we're not going anywhere." But she would persist, and it would sink into my ever-tired brain what she was trying to say.

We're not talking potty-training or anything, but it's a nice development. When it happens.

-Michaela will be put on another drug starting next week. This one is a form of valium, called Ativan. For those of you out there who also have a child with LGS, this therapy, using high-dose valium, has helped a lot of other LGS kids in the past. Dr. Gregory Holmes, arguably one of the best pediatric neurologists in the world (and who has seen Michaela), instructed Chief on how to use it safely to help his kids' brains get some relief from the onslaught of seizures. It's taken before bedtime, and appears to help the brain relax. It's only used for a short amount of time. Unfortunately, it can have some pretty serious side effects. Valium is a benzodiazepine that is often used in smaller doses as a relaxant for those suffering with stress or anxiety. It is also used in higher doses to short-circuit a seizure or cluster of seizures. This particular therapy uses the Ativan in a high enough dose to effectively relax you to death. Literally. Like, you stop breathing, you're so relaxed. It's a fine line, but if used correctly, it can be very helpful. Because of this potentially dangerous situation, Michaela will be monitored overnight at the hospital for her first dose. That way, if her respirations are getting too low, they can provide rescue drugs to effectively stop the ativan from hurting her or killing her. That's harsh, but that's what happens. We've done this therapy before, 2 years ago, and it had the desired effect. It helped and didn't hurt. Chief's good. It'll go well, and I'm excited to see her get this boost before school starts.

-We got a sign posted on the road.In a previous post, I mentioned how Boo has snuck out of the house and beelined for the street. Well, when I went to register our cars the other day, I asked the person in charge of roads if there was a way to get a sign up to help protect her in case she got out again. I was told that there is only ONE kind of sign available to alert drivers to children: "DEAF CHILD." They wanted to know if she was deaf. I said she wasn't, but that she was as good as deaf when she was in that frame of mind. They didn't even remotely quibble with me and radioed the sign guy to put up some signs. When I got home later that day, they were already up on both sides of the street. Now THAT's service for ya!

-Caleb turned 6 on Monday! My poor second son doesn't get hardly ANY print on this blog, I realized; much to my shame. I'm not sure why, but he doesn't make headlines for some reason. And that really has to change. Caleb is a very sweet child---always willing to help---and nothing like his brother Noah. For starters, he's dirty blond (as opposed to Noah's dark chocolate brown), and his personality is somewhat clown-ish. Caleb loves to steal the limelight. He's perfectly happy being the center of attention. Unfortunately, this also makes it easier for his Mama to figure out "who-dunnit"......it's usually Caleb.

After a rough couple of weeks last year, we decided to scrap his efforts at school and hold out for this year. So, he'll be in Kindergarten starting next month. Libby is going to attempt to learn by his side, and I hope that his age will give him a bit of an upper hand, and effectually boost his confidence in this area. Thankfully, he's not stupid, but Caleb seems a bit more easy to teach hands-on than with books. I believe this is his year to shine. I changed curriculum, and he should do great.Happy Birthday to you, Pudge. This is going to be an incredible year for you!

-We just got back from WV, where we were visiting Chris' family. This is a yearly reunion for us at his grandparent's lake home. It is a beautiful spot, and I'm so thankful that my kids get to know and spend time with their great-grandparents. They are truly wonderful people, and I have enjoyed them immensely over the years. I never really knew my great-grandparents. If they were alive when I was, they were unfortunately too aged to spend any quality time with me. Chris' grandparents are in their mid 80's but you'd never know it. His Grandpa played kickball, bocce, washers, and fished with our kids. His Grandma moved furniture (even though I tried to stop her!). They just keep going and going and doing and doing, and are truly examples of older people enjoying life and family. I always miss them when we're not together.

While we were there, Chris' Mom played a trick on Noah. She read about how he has a hard time reading anything other than what he's used to. So, she decided that she would read to the kids every night before bed to try to get him and the others interested in something different. She picked "The Chronicles of Narnia." Well, it worked! Not only were they hooked from the get-go, they simply couldn't get enough of the story and badgered her to read to them practically every time she sat down! We even caught Noah finding a quiet place to read ahead in the book while the others did something else. Her plan was a success, and now the children are listening to the stories from a CD collection of the books we have. I dare say that they're not as good as Grandma though!

Speaking of WV, do you remember what post I wrote from there last year?

-Gabriel is now 6 months old. Can you believe it? How time flies when you're having fun. And we truly are. He's a bundle of joy in every sense of the term. We are living him up to the fullest. I can now see why the youngest gets spoiled---you don't want to let go of them!

He is actively sprouting his first tooth. I am surprised at how well he is handling the whole thing. He's not terribly fussy about it, and when he does fuss, it doesn't seem as though it's anything other than being tired or hungry. Nothing like being in pain and miserable. Which he must be---if only you saw the awful bulge in his gums! It looks horribly painful! I'm really hoping the tooth will make it's grand entrance tomorrow. It's looked like it's going to bust through for days now.

So, that's what's going on for now. On another note, I can tell now why I'm not posting as much: This takes me too long! This post took me about 2 hours from start to finish. I guess if I didn't put any pics or anything in it, it wouldn't have taken nearly as long, but hey---pictures are the best part! I guess I'll just post every now and then, and try to load them up with a bunch of fun stuff.

Thursday, July 05, 2007

There are children out there a WHOLE lot sicker than Michaela, and I make it a point to remind myself of that. It may sound weird, crazy, or even sick, but I spend time reading other blogs about sick children. Blogs about very sick children. Children who probably won't outlive Michaela, and who suffer many times more than she ever will. Many of them don't have anything like epilepsy. They have monstrous diseases like cancer.

I do this to keep my life in perspective.

I mean, how can I complain when I read about a little girl who's had more surgery than I've had teeth cleanings? Or a little boy who suffers from screaming pain for hours at a time?

Michaela doesn't have to deal with pain in general. I know there are times when she'll have a seizure that will cause her to bite her tongue, or fall on the floor, or whack her arm. And I understand that a seizure in general is pretty hard on the muscles. It appears as if she's having charlie horses. I bet it hurts.

But that's nothing for her. She bounces right back. And her short term memory really helps, I'm sure. Just the fact that she doesn't think like a normal child, is in her favor in this way. She doesn't know what's going on all the time. She forgets the boo-boos quickly enough.

But the others....

Those children that know what's going on. That hurt. That are scared. I read their stories that their parents record in their online journals, and I ache for them. Literally. Like a ball sized rock in the middle of my chest.....constricting.....pulsing. Sometimes the stories bring me to tears.

So when things are tough for you, or your children, or you're having a hard day, always remember: It could be worse, and there's always a bright side. You're probably pretty healthy. And so are your kids. You're not watching them suffer, and you're problem with work/school/friends will work itself out in time. That's a blessing. We need to be thankful. It doesn't mean that you don't have troubles---we all do---but it could be worse. Right? For most all of us, our problems are the types of issues other people WISH they had.

So tonight, I'm thinking about Maria.

And Sophie.

And Jordan.

And Riley.

And Nathan.

And I'm hugging Michaela a little tighter. And whispering a prayer for these sweet children who's Moms and Dads wish they had seizures to deal with. Instead of terminal cancer or heart transplants.

It makes even my darkest days seem a little bit brighter, and helps me to kill any pity real quick.

****If children who suffer with cancer or other terminal illness capture your heart, like they do mine, then put your heartache to work and donate to a fund or charity that supports children in that situation. St. Jude's Research Hospital is my favorite. Find your favorite, and let them know you want to help in any way you can....big or small****

Yours Truly.....

I am a 34 year old wife and mom of 6. This journal was started to chronicle our adventures with our daughter and the treatment of her rare epilepsy. However, while it was written, it became a journal of our everyday lives as well. Hope you laugh, cry, and think as you read....I sure did :)